One Family: Two Very Different End-of-Life Experiences

Grand-père, as we lovingly called him in a tribute to his French heritage, was approaching 90 years of age when he began to have increasing difficulty with his balance. At first it was simply attributed to advancing age, but when he began falling out of chairs while seated, it became clear that something more serious was at work. Outpatient x-rays and an overnight stay in the hospital revealed what we had all feared: metastatic cancer involving the lung and multiple other organs, including the brain. The prognosis was a few months to live, but also time for goodbyes to all of those whose lives he had touched. As Grand-père returned home, cherished friends and family came to spend time with him, and last letters were written. To make these final experiences as free of discomfort as possible—for both our family and the beloved patient—hospice nurses brought all of their skills and wisdom into his home. Pain and agony were kept to a minimum as our family administered medications and sedation as needed. The death of a loved one is never easy, but with the help of the hospice team, the love and support of numerous family members and friends, Grand-père passed away as peacefully as we could have all hoped for. He was in the hospital only one night, and he died at home, his final hours spent in the company of those he loved, with soft harp music being played by a friend of the family.

Grandma's death was in many ways a marked contrast to her husband's. Grandma had suffered from crippling polio early in her life, but with an iron will she completed a master's degree in mathematics. By carefully managing expenses on a modest salary, she and Grand-père successfully raised seven children. A spontaneous bleed into her brain, however, caused marked personality changes later in life. Grandma became much more impulsive, but also much more outwardly affectionate. Her more childlike behavior placed incredible stress on the whole family, but particularly on Grand-père who faced the daily burden of making sure that her impulsive behavior did not cause her any serious harm. After Grand-père's death, however, the whole family became even more involved with Grandma's daily supervision and care.

Within less than a year after her husband's death, Grandma suffered a myocardial infarction. Her heart attack quickly resulted in heart failure requiring intubation in the emergency room. Although Grandma extubated herself during the night and seemed to be rallying, she suffered another infarction only a few days later. While Grandma quickly became unresponsive, she continued to have labored breathing. At this point, the decision was made by our family not to have Grandma reintubated, but instead to make her comfortable. When the primary nurse therefore asked if we wanted to have pain medication given, we answered yes. Shortly thereafter, the supervising nurse—who would make the ultimate treatment decision—was consulted to examine Grandma. Based on her assessment, however, the supervising nurse declined to administer palliative medications. In her words, “The patient is not suffering enough.”

Pained and troubled, our family remained uncertain as to how the decision to administer pain medication would eventually be made. Time continued to pass as Grandma inhaled and exhaled with profound difficulty. Once again, the primary nurse suggested that perhaps sedating medications would ease the struggle, but the same puzzling reply came again from the supervising nurse. “She is not suffering enough and doesn't need any sedation.” Our family remained confused and voiceless. Grandma passed several hours later, with, as I still believe to this day, more pain for both her and our family than was ideal.

While every medical case is unique, and every hospital has different regulations for the administration of comfort measures to those who are dying, the dichotomous experiences of Grand-père and Grandma raise the difficult question of how decisions are made to determine when a patient is suffering enough and when a patient can pass away. While the sudden onset of Grandma's heart attack would very likely have made her dying days more medicalized than her husband's, I do think that the involvement of a well-trained palliative care team would have decreased the suffering of both the patient and our family. In other words, end-of-life care should not only be perceived as an outpatient or home service.

In my own hospital, I have been very impressed with how a palliative care service run by the family and community medicine department has greatly improved the end-of-life experiences for many of my patients and their loved ones. As their reputation for wisdom and support has spread throughout the hospital, the support of palliative care teams is now being actively sought many times per day. The palliative care team's guidance has helped mitigate the suffering of many patients even when the disease is not fatal, but rather painful to treat. One of the major challenges, however, that end-of-life care faces in the hospital is that treatments and cures are at the epicenter of hospital services; death is often something to be avoided, denied, and if at all possible, conquered. As a result, making the transition from aggressive lifesaving interventions to palliation is a difficult one. The last days spent by Grandma in the hospital illustrate how such a shift can be confusing and overwhelming for both the health care team and the family.

In reflecting on the dying experiences of loved ones over the years, there are a number of recommendations that I believe would make easier the transition from aggressive end-of-life interventions to palliation. First: a greater recognition of the importance of palliative care teams and their establishment in all hospitals. Second: earlier involvement of palliative care teams during hospital admission, particularly for patients with advanced diseases that are unlikely to be curable. Third: honest explanations to the family and the patient regarding their role in determining what palliative treatment options will be used, as well as clearly discussing the criteria for such therapeutics. Fourth: providing training for all care providers, starting with professional school, to learn the communication and caring skills needed to provide patient- and family-centered end-of-life care. Fifth: greater availability of palliative care team members for consultations when the transition is being made from aggressive care to comfort measures. Since these transitions can occur suddenly before advanced planning has occurred, there is a need for urgent decisions that would be facilitated by the presence of palliative care providers.

Over the last half century we have made great strides in improving the end-of-life care for patients who can be cared for at home and at hospice centers. We also are, in my opinion, changing the way we care for the dying in the hospital. However, as these two very different end-of-life experiences of my family members demonstrate, we still are not where we need to be. Palliative care teams can help us to get there.